I am sorry to hear that you suffer with Trigeminal Neuralgia. I was recently diagnosed, and it is truly the worst pain imaginable.
I take Gabapentin (900mg 3x daily) have tried amitryptiline but hate how drowsy it makes me on top of the gabapentin. I use Percocet 10/325 for pain, I don;t think it stops the pain, but certainly makes it more tolerable. My Doctor tried Oxycontin but I really couldn't handle that along with the gabapentin and amitryptiline (as well as a beta blocker for HBP) so I just use the Percocet. Recently, my Dr gave me samples of the Lidoderm patch, I cut them into strips and put them along the cheekbone and over my eye. I have used Licocaine spray on my scalp when I get scalp tenderness too. When one of my teeth "acts up" I cover a q-tip in oraljel and place in on the tooth. My Doctor gave me some capsacian cream but I have not tried it yet - I have heard other people get good results with it.
How about you? what meds have you tried?
Isn't it rough, having an illness that is pretty rare - people often do not understand the pain. I have yet to actually "meet" someone who has TN, although there are a couple of good sites on the internet where I have "met" fellow sufferers.
I have never met anyone with TN either. I just started Gabapentin this week. I am taking 200mg twice a day. I don't think that's enough. It helps the pain a little bit.
I have not had good luck with Drs. and I have seen many of them who had know idea what was wrong with me. The 1st thing they would do is write a script for an anti-depressant and send me on my way.
I have the atypical TN. The burning on the right side of my face, jaw and right ear is just terrible. It is constant day after day. I don't get the electric shocks. It's just a constant burning. When it first started I thought I had an ear infection. I had a deep burning in my ear that just would not let up. It still burns to this day.
I have tried capsacian cream and it does work somewhat. Thank you so much for taking the time to let me know what helps you. Do you still have pain even with the medication?
Im happy to hear that the gabapentin is helping, even a little. Often it takes titration of this med upwards to reach a therapeutic dose of 1800mgs - 3600mg. One thing about gabapentin - it only stays in your system for around six hours, it is not metabolized by the liver (which can be a good thing for some people) but requires a more frequent dosing to keep therapeutic levels in your bloodstream. It is often used 4 times a day.
Gabapentin also is sometimes used in conjunction with other meds like Baclofen or Klonopin. Unfortunately the side effects all seem to include drowsiness - but often pairing meds seems to produce good results.
I have tried accupuncture but won't do it again - I don't know if it caused a pain flare or coincided with one, but I was pretty miserable for days after the treatment.
Jill, I can't stress enough the need to get a good doctor to support you. With something like TN you get Doctors who have never seen it in their career or only rarely. Often, with resources like the internet, patients are better informed than the Doctors. The Trigeminal Neuralgia Association (TNA) has great info that you can take along to appointments. I am really lucky that my family doc diagnosed me and both he and his nurse practitioner are on my side. I have heard of patients whose Doctors don't believe their pain, or that it occurs bilaterally (Yep, it can do) I don;t know which area of the country you are in, but I hope that you have access to good compassionate doctors.
Wishing you all the best Jill, if you have any other questions or just want a sympathetic shoulder, please post back on this board
Thank you again for your information. I checked out the TN website and it does have a lot of good information that I am taking to my Dr. appointment today. It was my family doctor that diagnosed me as well.
I live in Michigan and have even traveled to the other side of the state to see a doctor at a well known place and all he told me is he could find nothing wrong and he thought I had issues I needed to deal with. I was so upset I felt like noone will ever understand the pain I going thru and I will just have to learn to live with it. So I can really appreciate what you are saying about finding a doctor that's on your side.
Thanks again for everything and I hope you are feeling well.
Yes I do have TN. It's a horrible thing, and I'm having or going through some breakthroughs here recently.
Wish I wouldve seen this earlier. How are you doing now, is it still affecting you, or is it starting to go back away now?
I take Tegretol and Baclofen w/ Percocet for pain. Doctor just bumped up the Tegretol, but so far it's not helping. Don't worry though, everyone is different, and before it helped TREMENDOUSLY (to the point it took it away for several months)! I don know if I'm just getting tolerant to it, or what the issue is.
It's another sleepless night for me, so I guess that means I'll call my doctor tomorrow.
He's great with the TN, but Pain relief - not so much. A little stingy on pain meds,if you know what I mean. I'm going to have another talk with him tomorrow, as this is about the last sleepless night I want - EVER.
I hope you're doing better by now. Feel free to talk with me anytime! I typically check on here every so often.
Take care, Hugs,
Last edited by HaveaHeart; 06-10-2008 at 10:34 PM.
Yes, I am still having problems. I am taking neurontin 200mg twice a day. This helps to make it more tolerable. I saw my Dr. on Monday and he is sending me to a Neurologist. I can't get in to him until mid July.
My Dr. wants to keep me at the tolerable level of neurontin until I see the Neurologist so I am able to describe the pain better to him.
My pain is constant, never ending. My right ear and side of my face burn everyday. I have headache on the right side daily as well and the muscles feel very tight on that side. I don't have the classic electric shock pain. So could this still be TN?
I hope you are doing better. It doesn't help when you are not able to sleep. If I have a sleepless night I feel just terrible the next day.
Take care of yourself and please keep me posted on your progress.
Hi Folks! It's been awhile since I've posted, but I am lurking every day and try to keep up with everyone's issues. When I logged on today it was AMAZING to find the topic of Trigeminal Neuralgia!! For the past month or so I've been experiencing a strange tingling on the left side of my face, mostly where the jaw is located. That lasted for about 1 week and would come on unexpectedly, last for a few seconds or a minute, and then go away. Then the tingling turned into EXCRUTIATING PAIN that seemed to well-up in my jaw,lower back molar, floor of my mouth under my tongue on the left side and cheek pain. It lasted for about 1 minute, sometimes 2, and then stop. It became increasingly worse and the worst part was it was so unpredictable!! Well, I thought maybe I had a blocked salivary gland or a stone and my dentist referred me to an oral surgeon. I saw him yesterday and he ruled out the salivary gland but mentioned Trigeminal Neuralgia as a good possibility. Now he wants me to see an Ear, Nose & Throat doc. Aside from that possible diagnosis, he mentioned Periadenitis or even a recurrence of shingles. I'm desperate to get this under control. Did any of you have xrays or MRIs to help diagnose the problem, or was it based on the clinical symptoms and elimination of other problems? Were you treated by a Earn Nose & Throat doc? I'd love to hear more about your course of diagnosis, etc. Thanks so much!! Memere (KathyMac)
Well I got the offical diagnoisis from the Neurologist today that I definately have trigeminal neuralgia. My Dr sent me to the Neurologist just to make sure he wasn't missing something.
I have to continue to increase the neurontin every couple days until I am at a dose that keeps the pain at bay.
This nightmare started for me as a result of a barotrauma to my right ear after a plane flight. I had to have ear surgery to repair the hole and my ear drum and I have been left with this burning pain ever since.
Hopefully the neurontin will help. If anyone has any other suggestions to help the pain I would really appreciate knowing what that is.
by chance I saw your post today. I'm sorry to hear that you are still having pain - plus that 'actual" diagnosis - it made me very sad the day the neuro confirmed the TN diagnosis. Actually, after a repeat visit to him I walked out of his office because he didn't want to discuss additional ways to help and accused me of "hanging out in internet chat rooms". I was soooo insulted and angry, seeing as 1.) I've gotten some really good advice on internet boards and 2.) I have a ton of info from the Trigeminal Neuralgia association that I have found online. I decided then and there that any Dr that was too threatened by me being an active participation in my care was not for me.
I have been referred to the Neurology dept at UCSF by my fabulous GP so I am hopefully there.
Meanwhile (sorry for the rambling) I took my copy of the TN associations "Striking Back" to my GP and showed them the section on compounded medications. I really wanted to give Tegretol/Carbamazapine a try but I'm at my functional limit on Gabapentin before I get too tired and lose my creative streak (and thats what I do for a living) My Dr was very interested in the idea that small amounts of these drugs applied topically could help so I got a script for carbamazapine/lidocaine and ketamine cream, to be applied 4x daily. I love it! It's an awesome adjunct to the gabapentin, and even though its unpleasantly gritty, you only need between 1/2 - 1 gram and it even helps my make up stay on better ha ha
Can you ask about a compound cream? There are other options for neuropathic pain creams including gabapentin, baclofen, lioresal (sp) as well as clonidine. I am lucky that we have a compounding pharm here relatively locally but if you don't there are many mail order and online ones. One tip I got is that the base that they use is super important for the absorption of the drugs - lipoderm is supposed to be the best.
ANyway thats my news for now, if you come up with anything new, I'd love to hear about it. We TNers need to stick together!
We do have a compound pharmacy here but I am wondering if I need to see a doctor more familiar with TN. My GP said this is certainly not his specialty. The Neurologist I went to does not prescribe medication he only gives his recommendation to my GP and I have to get everything from him.
I just feel so lost and alone because no one understands the pain. I have been written off by most doctors as being "all in my head"
Does the neurontin really help you? I just want it to kick in so bad that I am stressing myself out which makes tha pain worse.
Thanks again for replying to me and I agree us TNer's do need to stick together.
Take care of yourself,
Also, I forgot to mention that all this pain has caused me to clench my jaw so tight that I have developed TMJ with neck pain.
wow - I am so sorry that you are having such a rough time. TN is an unbearable pain, and I think its really, really hard to be suffering from something and not getting the medical support that you deserve...
I know that it is necessary to titrate up very carefully with Neurontin, can you tell me what dosage your Dr is trying to get you to? I am stabilized at 1800mg - thats the most that I want to take and still be functional. My Dr has suggested raising the dose - I know that you can go up to 3600mg, and I have even heard of someone on 4800mg - but like I said in my last post - I get too fuzzy and lose my *spark* on too much more. So, yes I guess that Gabapentin does work for me. It does not eliminate the pain, but makes it more bearable, certainly in conjunction with the compound cream, or sometimes I use lidoderm patches cut in to strips across my cheekbone and temple.
Of course, it is possible that even with higher doses Gabapentin/Neurontin may not be the right med for you. Ive heard that Gabapentin is good for the burning, gnawing kind of pain often associated with atypical TN - but some people find relief for the lightening strike variety. It used to be said that Tegretol was the gold standard for TN - that neuros would prescribe it and if it relieved your pain, then you definitely had TN. That sounds like hogwash to me - yes, Tegretol does relieve nerve pain in some people but if this was such a one size fits all, then there would not be thousands of people suffering if it was "the cure" (this incidentally is what the Neuro that I walked out on told me...) Nevertheless, with my personal feelings aside, it is an excellent medication for many people. There are a slew of others - Lamictal, Baclofen, Klonopin, Keppra - it really takes a Dr who is willing to listen to the patient and experiment with different meds to find something that works.
There are also too many Dr.s who know little about this disease other than the stereotypes they have heard. I was told by the neuro I didnt like that I seemed "young" for TN - that it usually strikes people in their sixties ( I am 45) I have since made connections on another bulletin board that I can't name here or I will get banned - and there are many people my age and younger. There is even a lady who posts about her young daughter (six I think) who has been diagnosed with TN.
Do you experience pain on all three branches of the nerve, or can you identify pain along V1 V2 or V3? Do you have triggers, or trigger points. Does eating bother you? How about wind or air conditioning?
Can you tell me what geographical region you are in in the US? You don't have to be too specific. I am lucky that I live in Northern California - plenty of pretty open minded Dr's and UCSF less than 100 miles away.
Jill I'm sending you a huge cyber hug. I truly hurts me to think that you are suffering the way you are.
keep in touch
oh, btw - I totally hear you on the jaw thing - I did something similar a few weeks ago and could on eat soft food for a week. Poor thing, TMJ on top of TN - have you considered a night guard? My Dr recomended one that just fits between the front teeth as a full mouth guard could irritate or trigger TN pain. I have not got one yet...your post reminded me about that! See, too much neurontin and I forget stuff
Thanks again for the information. I really appreciate your help with this. It's just nice to talk to someone who understands.
I do have the A-Typical type. Mine is a constant burning deep in my right ear and along the 2nd and 3rd branch of the trigeminal nerve. It burns up the side of my head and face as well as my tongue. The burning ear makes me crazy. I do have trigger points but with the consistant burning I cannot pin point if anything makes it worse. I don't think so because it feels terrible no matter what.
I will be up to 1200mg of neurontin in a couple weeks and then I have to call my Dr. with an update.
I live in Michigan so during the summers we have a lot of humidity and the winters are long and cold. I've lived here all my life but would love to be someshere with nice warm weather all the time.
Thanks again for taking the time to help and just listen to me. I hope you are doing well and here is a big hug for you too! Oh by the way I just turned 46 years old so we are close in age.
I hope you don't mind me jumping on to your thread. I'm at my wits end and have been scouring the internet looking for anything I can find on TN.
I have had random electric shock stabbing pains for about a year, but with no other symptoms. Plus last year, my jaw decided to lock up and ache for about a week, where I could hardly speak or eat.
Then two weeks ago, I started having highly sensitive skin on my scalp and forehead and down the right hand side of my face accompanied by the occasional stabbing pain in my head or cheek bone, burning skin, aching lower jaw, painful and sensitive teeth and the pain got so intense that I felt like I was totally losing the plot.
Went to the doc (i'm in the UK) last week and he said straight away it was Neuralgia (but didn't specify TN - although everythin I have read points to it?) he prescribed Tramadol (Zydol) which when I am in pain don't seem to even touch it. I have to take them straight away when I wake and then top up just to keep the pain at bay, but then i'm just totally spaced out or knocked out all day. I would cry if it wasn't so damn painful when the tears run down my cheeks - pathetic I know
I am going back to the doc tomorrow to request an MRI and go privately and also a change of meds? I can't go on like this, I haven't eaten for days and I just feel so alone.
If anyone can give me any advice, or what to ask my doc, or just tell me whether i am barking up the wrong tree, please please please do so. Any help would be appreciated.
first of all, of course I don't mind you jumping in the thread - I know that Trigeminal Neuralgia is a horrible painful disease, and that it is pretty rare. Like I said to Jill, we TN'ers must stick together!
I'm sorry that you are in so much pain. I know all too well how painful it can be. Can I ask you some questions, then maybe with your answers I can offer you some advice.
Are you taking any other medications to help your neuralgia other than Tramadol (for example Neurontin, Tegretol, Dilantin?)
Have you had any other diagnostic tests ( Neck x-rays, CT scans)
The way that you describe your painis almost exactly as i would describe my pain (unmedicated) My initial pain was back of head (occipital region) feeling of something crawling inside my ear, pins and needles above my right eye and then BAM! it hit hard, the repeated electric shock pains in my face, I could visualize lightening branches spreading across my cheekbone. I've had sensitive teeth - had them checked and they are fine. Its just these darn nerve pains that make it feel as if there is something wrong with my teeth and jawbone. Sometimes I put benzocaine gel on a q-tip and put it on the offending tooth to numb it. Sometimes the skin on my scalp "crawls" or feels sunburned. I have gone so far as to put EMLA cream (Xylocaine/Prilocaine) on my scalp to numb it up. Made for a very unnatractive hair style
Neurontin is my lifesaver, although it does make me goofy (or as the people I work with would say, goofier
Please post back, I will check the board again tonight ( I am in CA so you are 8 hours ahead of me)
You are not alone, big, big hugs across the pond to you, I'll try and help you as best I can.
Hi Heather, you really don't know how good it feels that someone is there. It's 6 am here, and I have been up all night again. The Tramadol doesn't touch the pain. Sitting upright in one position and not moving my head/neck at all seems to be easing it slightly right now, but my jaw is rigid with about a half inch gap between top and bottom teeth and my right eye is tearing constantly. No shocks for a short while though.
I've been prescribed nothing else for the pain and no tests were even mentioned when the doc diagnosed me. I am going back this afternoon though, I need better pain meds for sure. I am signed off sick from work. But I don't know how long I can go on with this, it terrifies me :'( I have been so close to going to casualty so many times this week, but they are useless. I have broken down in hysterics (which really isn't like me) more than once!
The skin on my right hand side forehead is so sensitive even a strand of hair brushing it is excruciating. It's been constantly like this. My scalp is sore, but not all the time, but I have the crawling sensation over it. My cheek feels like I have been thumped hard and feels so swollen but doesn't look as if it is. My eye tears and half closes when my jaw clenches. My lower jaw I can't even describe the ache and then pain and then ache, and my teeth I think i'd rather pull them out one by one myself than go through this. I can't brush my teeth, wash my hair, or bathe. I am so miserable and depressed and I suffer from depression already. I am so so sorry to burden you with this rant. My DH assures me that we won't leave the surgery today without some sort of positive answer or cure, other than that I am going to have to ask to be hospitalised. I have not eaten and hardly drunk in two weeks, lost over 16 pounds. I really don't know what to do
I am so so so sorry, this sounds so dramatic I know.
Please don't worry about being dramatic - its hard not to with TN or other Facial Neuralgias.
I'm so glad to hear that your DH is supportive -that is a huge help both at home and when you go to the Dr's. My DH was awesome when I was first sick because I was such a terrible mess that i really needed someone there during Dr's apointments to bring up such things as symptoms, need for pain relief etc.
Now what I thought might be helpful (and I hope that you don't think its presumptious) is a list that you could take with you that you and your DH can write down before your appointment with your Dr.
Here are some suggestions:
Ask your Dr for a medication that targets nerve pain (gabapentin/lyrica/tegretol/dilantin etc) ask about adjuncts (baclofen/klonopin/amytryptiline)
Ask for adequate pain control (hard with neuralgia, but something stronger than Tramadol - like oxycodone or I believe that they use a type of codiene in the UK that we don't use here?)
Ask for adequate diagnostic testing - c spine x rays (useful for diagnosis of occipital neuralgia) thin slice MRI with contrast
Ask about local anaesthesia - lidocaine patch (called lidoderm in the US) or compound creams - I have one with Tegretol/Ketamine and Lidocaine.
Ask about complementary therapy such as accupuncture, massage etc
Primrose, I also understand that the health care system is a little different here than it is in the UK ( I grew up in London) - it is much easier for me to say "oh, I want to see such and such a specialist neurologist" so I don't mean my suggestions to sound like demands. I do believe that there is a Universal right to adequate pain relief that knows no borders. And my last experiences of going to casualty (ER for those here reading this) do not leave me confident that you would find relief from this disease there.
If you feel comfortable ask about future surgical relief if and when your pain cannot be medically managed (MVD surgery, Gamma Knife)
You are not burdening me in the slightest with your "rant" -its not a rant to me - it's a perfectly rational cry for help when your world is falling in. Four months ago I would not have been in the position to answer your post - I was in so much pain - and then even as my pain became managed I fell into a pretty deep depression. Things are much better for me now and if I can help you just the tiniest bit that would make my day.
Well I'm going to hit post now - its 11:15 local time and I'm fading fast from a long, long day including work - yes I have recently been able to return part time to my job so things are looking up.
Please post again - I tend to be somewhat of a natural insomniac so I may be awake in the middle of the night (Lunch time by you!)
Thinking of you and sending more hugs
Heather in CA
oh, btw - you are also not alone in Wales - I have an internet friend suffering from Trigeminal Neuralgia that I met on a different board. Smalll world, huh?
Thank you so much Heather, I really can't tell you what a comfort this message has been. Thank God I have a pen to use on this laptop cause not capable of hitting a key right now. will ask DH to make that list when he gets up. Goodnight and sleep fight for now, will keep you posted later. Sorry message is short suffering right now.
Much love and my most sincere thanks for understanding.
I finally found out that I have trigeminal neuralgia after seeing countless doctors, ENT's and dentists. I wish I could offer advise to you but this is new to me.
My pain is a constant burning deep in my right ear that goes along my jaw, top and bottom teeth and along the side and top of my head. My skin feels like it is sun burned too and it hurts if I touch it. My neck muscles are very tight on my right side. I do not get the electric shock just constant burning non stop.
I wish you the best of luck and please do not give up. All I can offer you is a big hug and I am here if you just need someone to vent to. Take care of yourself and please keep us posted.
Heather: You are a true angel. I really appreciate your knowledge help and kindness. Thank you again and a big hug to you from me in Michigan.